The End of the IEP and the Beginning of “Reasonable Accommodations”

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management. He started an Autism Speaks U Chapter: Student Disability Awareness on campus to help spread awareness and raise funds for those affected by autism. Autism Speaks U is a program designed for college students who host awareness, advocacy and fundraising events. It is an exciting and collaborative way for students to raise funds and awareness for Autism Speaks, while supporting their local autism communities.

In June 2007, I graduated from high school. It was an amazing time for me. The majority of my classmates and I were off to great new beginnings. My new beginning began at Seton Hall University. “This is going to be great!” I thought to myself on many occasions before the first day of classes.

Before this day happened however all new incoming freshman had to attend a summer “Orientation Period.” During this period we would have the chance to spend the night in the freshman dorms, receive our laptops and also get to meet several faculty members at the school. In addition to this, I had one additional separate meeting that most of the other freshman didn’t – an accommodation meeting with The Director of Disability Support Services at SHU. This is when the ball dropped for me.

During the meeting I learned many intriguing and frightening things about how college was going to be a huge difference from high school; the main difference for me was going to be “The IEP.” When I asked what the difference would be, I was told the difference was I would not have one. I can’t believe I was that oblivious that this was going to happen. Later, I learned that under the Individuals with Disabilities Education Act (IDEA) the IEP only exists K-12th grade. At the college door you get a Section 504 accommodations plan.

In college, you only receive “reasonable accommodations” to help make the classes accessible to those specific students with disabilities. The bottom line: there is no plan for you. The only way to receive what you need is by being independent and advocating for your needs. But what does anyone need? If you are a freshman and have autism how do you explain what you need?

At times, this led to many distractions that never would have occurred when I was younger. Sometimes I thought it was unfair. I had to advocate for my own single room in the dorms due to my social complications, extended time on tests for my reading comprehension, a note taker for my classes due to my lack of motor skills and many other complications. For someone trying to fit in it seemed like it was designed to make you stand out like a sore thumb. It even seemed as if as soon as I accomplished one of these tasks, the next semester would begin and it would start all over again for my new courses which required different accommodations.

When you add this to managing a full course load, trying to socialize with your fellow peers, along with being involved in extra-curricular activities, it can sometimes feels like you are drowning. I mean, “reasonable accommodations” are supposed to help level the playing field, not hinder you in any way. There isn’t a “reasonable accommodation” for that.

Although getting accommodations sometimes was daunting, I was still able to get by and will be going through the same process again with Disability Support Services come this September in my senior year at Seton Hall. For several semesters now I sit up front and tape most of my classes and download the recordings onto my computer, instead of utilizing a note taker. Never would have thought of that freshman year. For those reading who are younger and not yet in college, my advice is to sit in on as many IEP meetings as you can. Learn and ask as many questions as possible. The letters after your diagnosis don’t tell you if you need extended time or a note taker, but knowing if you are a visual or auditory learner may. Within this I would also strongly consider letting your parents be involved in some of your early decision making, especially when it includes freshman year accommodations. Independence is not grown over night and we all need that added voice sometimes to make sure we are level-headed and knowing exactly what we are getting ourselves into.

As many say early intervention is the key once first diagnosed, early intervention for those on the spectrum in college (and high school for that matter as well) is the key to ultimate success. What I’ve noticed about autism over the years is that it’s not a weakness unless you let it become one. Don’t let it hinder you. Let the advantages of who you are and what you have to offer be your ability to make it at the college level; just always know what your weaknesses are so you can be ready for whatever is to come next!

My son Graduated this year and it was a big surprise for us also that the IEP no longer was availble for him and we had no say he was his own advicate. Scary.
We were told it followed him right through College so we were totally surprised when we found this out.
He will be going to a local community college to begin with so he can live at home and is 10 minutes from the school.
All summer classes are excelerated and one meets two days a week 3 hrs each day. He found taking a 8g MP3 player with him helped alot he records it then downloads the class on his laptop so he can listen and take notes at his own speed.
All our best in your future.

Thank you for sharing your story. It is an inspiration to the current struggle I have with my dughter’s school district. I have such a difficult struggle because my daughter has never been diagnosed with Autism. I cannot find a doctor who will or feel he/she can diagnose her with Autism. Many believe that she may have a mild form of it coupled with a learning disability, but they donor believe that she show ghe most common characteristics of an Autistic child. My daughter is now 12 years old going to the 6 th grade testing on a 2nd grade level. She has been in school on an IEP since the 2nd grade. I consider the 1st grade a wasted year. I know without a doubt that my daughter is Autistic and does have a serious learning disability in mathematics and language. Her problem solving skills are low as well. Besides all of that, she is a great reader with beautiful penmanship. She also articulates words well but experiences difficulties in expresses herself when trying to communicate with people. She usually gets very nervous and does or says something that comes off very weird. Her social behavior when she is around other children is usually very awkward. At this point in her life, I am dreading the thought of going to Junior High within a year without the proper diagnosis and IEP. Here in MS the resources seems so limited and I believe my daughter may suffer within the long run because of it. I feel so defeated at times but I do not want to give up.

Kerry. You are tough cookie. My son is 27 with Aspergers Syndrome and in his senior year at a large university in eastern NC. You are correct. No IEP in college. You are on your own. You are spot on with hand-writing skills, note-taking. My son hates it with a passion. Within 5 miles of his university there are 4 major Autism services. However, not one is listed as a resource on the university disabilities website. How strange. My son went to a Community College, got his Associate Degree and moved to the university. Dorm living would have been a nightmare at his age, so instead we opted for a gated “student apt” complex about 4 miles from the university. Bus service to and from the apt to the university is provided. He does have a car and a driver’s license. Logically taking the bus makes $$ sense. I hope your parents are involved with asking questions and offering as a guide to get you through this. I find that parents are the best advocates. It is difficult for an HFA to “self-advocate”. You are doing a tremendous job and I have no clue, how you do it.
I wish you luck. Seton Hall is a great school. Please keep us updated on voyage through college.

I would just like to say thank you so much for this article. I am a parent of a 16yr old young man with autism and i am right in the middle of this college planning process. while it is difficult i am glad to learn some key points from someone who’s already been through thr process. thanks again and keep the advice commin’

Very good advice and hints for students who are bound for college and just happen to have ASD. You have much to offer, Kerry. Keep advocating for yourself and others! Your parents must be so proud of you.

Congratulations to Kerry on the college success. I second your comments for younger kids. When my older son was in high school, his Special Ed teacher made sure he sat in on his annual IEP meetings especially in Junior and Senior years. Last summer before he started at the local junior college, I made an appt. with the Disability services coordinator and accompanied him to the meeting. Even though he was in charge, I was the back-up. Once school started he and his counselor worked as a team to get him what he needed with me playing the back-up role occasionally. He too needed a tape recorder for notes and extra time for tests. He has had a very successful first year including making it onto the Dean’s list for two of three quarters and becoming a member of Phi Theta Kappa. Knowledge + support = success in college. Our bright kids have much to offer once they have the support and guided independence they need.

Kerry, thank you so much for writing this article! We are going through the college selection process with my older son, who is typical, and I’ve been thinking to myself, how is this going to be when it’s time for my second son, who is twelve and has autism, to figure out where to go to college. You have a lot to be proud of, and I appreciate you sharing your experiences and insights.

I am a Senior this coming year, and I’m doing my senior project on Autism. Some of the things I am researching is how people with autism live they’re lives ages 0 till death. I’ve always wondered what happened after they graduate and this post helped me immensly. My friend is 13 and living with Autism and I’ve grown up with two other kids in my class with Autism. I’ve always found it interesting and always had a way of getting along with them better than most people. If anyone knows how I could find out more on how they live their lives further after graduating and what happens to them next and such, can you let me know? It would help extremely. Thank you.

I am a Senior this coming year, and I’m doing my senior project on Autism. Some of the things I am researching is how people with autism live they’re lives ages 0 till death. I’ve always wondered what happened after they graduate and this post helped me immensely. My friend is 13 and living with Autism and I’ve grown up with two other kids in my class with Autism. I’ve always found it interesting and always had a way of getting along with them better than most people. If anyone knows how I could find out more on how they live their lives further after graduating and what happens to them next and such, can you let me know? It would help extremely. Thank you.

Thanks for your story. I started college in 2007, blind and freshly diagnosed with autism. The Netherlands has a non-discrimination act on disability that pertains to higher education, but apparently it only goes so far as the university wants to. My university prided itself on its autism buddy program, but, because once a week an half hour meeting with a psychology major was not enough guidance, I was told that I either learn to survive the way the program worked or quit. I quit after two months, never to return to regular higher education again (I now distance learn at a very slow pace).

Thanks everyone for all of the comments and views! I have been blessed with the opportunity to both work with Autism Speaks and also have the ability to write these blogs. It’s been a surreal experience which I hope to continue doing in the future.